We Remain Human

We Remain Human October 11, 2017

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My friend Anna is beautiful. She’s always posting selfies of her new makeup experiments– makeup is her hobby. Nobody needs makeup to be beautiful, but Anna knows how to look beautiful in makeup.  She coordinates different vibrant lip and eye colors to match her whimsical clothes; she recently dyed her hair purple for even more color. She’s got a whole album of selfies on her facebook, posing with different combinations of lipstick and eyeshadow, a whole gallery of rainbow-adorned faces with bright hair.

Awhile back, she posted a selfie while breastfeeding her son on the toilet.

Anna has Chron’s disease, an autoimmune condition that inflames and scars the digestive tract. She’s in pain most of the time; her children are used to toddling into the bathroom to be nursed, because she spends so much of the day in there. Her condition also causes fatigue and mental health symptoms, among other things. Weeks ago, she was in the hospital with possible sepsis. Right now she’s surviving on painkillers because the insurance company has forced her to delay her intravenous medication.

Makeup is one of the ways she copes. It’s something to do for fun when she’s sick, and something that shows her that her body is beautiful.

Last month, Anna mailed me a box of makeup for my own. She included a note. “Chronic illness sucks, but hopefully this will make it a little easier.”

And it does. On bad CFS and Fibro days, I like to take a bath and put on a full face of makeup that matches my pajamas. I take a selfie before I go back to bed. My pillow is covered in smudges, but I feel beautiful.

The other day, another friend of mine, Matt, posted a selfie of his own, on a hand-pedaled recumbent bike. Matt has Friedrich’s ataxia. It’s a rare, hereditary disease that damages the nervous system while leaving the cognitive functions intact. Right now there’s no cure. Friedrich’s Ataxia has robbed him of his ability to walk. He has to speak carefully to be understood. Worse things could happen down the road; FA can destroy the sense of hearing or sight. But I don’t like to think about that. He’s one of the funniest and most joyful people I know. I don’t want to think of things being harder for him than they are.

“For too long I have been ashamed of any pictures that make me ‘look handicapped,'” he said. “Only by saying Voldemort’s name can he lose his power…this is me trying to stay active on my recumbent hand-cycle.”

Here I’ve been afraid to even think about Matt’s condition, as if thinking too hard would summon Voldemort, but Matt’s been posting pictures and saying its name.

The most frightening thing about people, is that we break. Our bodies break. It may not have happened to you, yet, but it will. I’ve heard someone describe the human person as “A ghost piloting a meat-covered skeleton.” The reality is far worse than a meat-covered skeleton. It feels more like we’re ghosts piloting a diverse array of eccentric-looking spacecrafts each performing a slow-motion self-destruct. Our ships are falling apart. Someday, they’re going to die completely and eject our naked ghosts into space. For now, though, we’re trapped inside, and it hurts. Bodies hurt. For some of us, bodies hurt all the time. For some, bodies slow down to comical speeds, or walk with a humiliating gait. Some can’t walk at all. Immune systems go haywire and start eating healthy tissue. Joints swell up. Brains don’t function as they should. Senses shut down. We break.

The most beautiful thing about people, is that we remain human when we break. We breastfeed on the toilet in horrible pain. We say the name of our terrifying condition and we find a bike we can ride. We leave makeup smears on pillows. We reach out to one another. We share selfies, and compliment each other. We comfort and encourage our sick friends. We send packages and notes. We paint rainbows on our faces to remind ourselves that we are beautiful.

And we are beautiful.

We are so much more than ghosts in disintegrating vessels. We’re people– spirits embodied, creatures of the fallen earth with the icon of Heaven stamped onto our being. I don’t think God meant us to suffer as we do, but somehow it came to pass anyway. And so He filled suffering with His grace. In our pain, in our disability, in our conditions we’re afraid to even name, we are filled with grace. I see the icons of Christ– the courage, the endurance, the self-sacrifice of Christ– more clearly in my disabled or chronically ill friends than I do in anyone else.

We break, and we remain human.

This is a mystery I could ponder forever.

 

 


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